curehht.org

Cure HHT is a nonprofit organization that describes itself as "the cornerstone of the HHT community." It serves patients, families, caregivers, clinicians, researchers, and partners, and works toward a future where hereditary hemorrhagic telangiectasia (HHT) is "found sooner, treated better, and ultimately cured." If you or someone you know is affected by HHT — or you treat people who are — Cure HHT is a starting point for education, care navigation, clinical guidance, and community connection.

What HHT is, in Cure HHT's framing

Cure HHT emphasizes that HHT is more than nosebleeds — it is a whole-body disease. Hereditary hemorrhagic telangiectasia, also known as Osler-Weber-Rendu syndrome, is a genetic disorder that causes malformed blood vessels in multiple organs. It often begins with nosebleeds in childhood, but some of its most serious complications can exist without obvious symptoms. Learning how HHT can affect you — and what can be screened for, monitored, and treated — is, in the organization's words, "an important part of living well with the disease."

The scale it cites:

Who Cure HHT serves

The site organizes its offerings by where you are with HHT, because the disease "touches patients, families, caregivers, and clinicians differently."

• Newly diagnosed patients — A diagnosis is treated as a starting point: what to screen for, how to build a care plan, and what family members may need to know.
• People seeking HHT care — HHT Centers of Excellence bring specialists together around the same patient. Cure HHT points visitors to a Center or an HHT-experienced physician.
• Healthcare professionals — Because HHT surfaces across specialties, the organization offers guideline-based screening and management guidance, clinical tools, and referral pathways.
• Families, caregivers, researchers, and partners — These groups are named as part of the community the organization convenes around one shared goal.

What it provides

• Disease education — Plain-language explanations of what HHT is and how it can affect multiple organs.
• Care navigation — A path to find an HHT Center of Excellence or an HHT-experienced physician.
• Clinical resources — Screening and management guidance, clinical tools, and referral pathways for providers.
• Community and updates — Research breakthroughs, patient stories, and webinar invitations, available by joining the community.

Track record and research activity

Cure HHT says it has served the HHT community since 1991 — more than 35 years. That work, it states, has helped build expert care, stronger clinical guidance, a growing research community, and new paths toward treatment. On the research side, it reports 15 treatments in the HHT pipeline today, compared with 3 in the pipeline between 2018 and 2022.

The organization frames its purpose through its community: as patient and caretaker Terry puts it, "Our stories are what move us from an asterisk in a medical textbook to a community worth as much attention as any cancer or other disease."

When Cure HHT is the right starting point

Turn to Cure HHT first if you need to understand a new HHT diagnosis, locate specialized care, or find provider-facing screening and referral guidance. If you are a clinician who encounters HHT across specialties, its guideline-based tools and referral pathways are aimed at you. And if you simply want to stay current on HHT research and community events, joining its mailing list is the direct route.

HHT (hereditary hemorrhagic telangiectasia), also called Osler-Weber-Rendu syndrome, is a genetic disorder that causes malformed blood vessels to form in multiple organs. It often starts with nosebleeds in childhood, but it is a whole-body disease: some of its most serious complications can develop without obvious symptoms. Because HHT can be screened for, monitored, and treated, understanding how it affects the body is a practical part of living well with the condition.

Why HHT Is More Than Nosebleeds

The most visible sign of HHT is frequent nosebleeds, which is why the condition is often associated with them. But the underlying problem — abnormal connections between arteries and veins, called telangiectasias and arteriovenous malformations (AVMs) — can occur in organs beyond the nose.

According to Cure HHT, HHT is a whole-body disease, and some of its most serious complications can exist without obvious symptoms. That gap between how HHT looks and how it behaves is the main reason screening and monitoring matter.

How Common Is HHT?

The 80% undiagnosed figure is the number to sit with. It means most people who have HHT do not yet know it — which is why recognizing the pattern of symptoms and knowing where to get evaluated matters.

What HHT Can Affect

HHT involves malformed blood vessels in multiple organs. The disease often begins with nosebleeds in childhood, but its reach extends beyond that early sign. Because complications in some organs may not produce clear symptoms, the condition is managed partly through proactive screening rather than waiting for problems to announce themselves.

Cure HHT frames the practical takeaway directly: learning how HHT can affect you — and what can be screened for, monitored, and treated — is an important part of living well with the disease.

Where to Start, Depending on Your Situation

Cure HHT organizes its guidance around where you are with HHT, since the disease touches patients, families, caregivers, and clinicians differently.

If you are newly diagnosed

A diagnosis is a starting point. The next steps are understanding what to screen for, how to build a care plan, and what your family may need to know.

If you need HHT care

HHT Centers of Excellence bring specialists together around the same patient. You can look for a Center, or an HHT-experienced physician, near you.

If you are a healthcare professional

HHT surfaces across specialties. Guideline-based screening and management guidance, clinical tools, and referral pathways are available through provider resources.

Research and Treatment Progress

HHT research is active rather than static. Cure HHT reports 15 treatments currently in the HHT pipeline, compared with 3 treatments in the pipeline between 2018 and 2022. The organization has served the HHT community since 1991 — more than 35 years.

That pipeline growth is the context behind Cure HHT's stated goal: building a future where HHT is found sooner, treated better, and ultimately cured.

Staying Connected

Cure HHT describes itself as the cornerstone of the HHT community, bringing patients, families, clinicians, researchers, and partners together around one shared goal. You can join the community to receive research breakthroughs, patient stories, and webinar invitations.

As HHT patient and caretaker Terry put it: "Our stories are what move us from an asterisk in a medical textbook to a community worth as much attention as any cancer or other disease."

A new HHT diagnosis is a starting point, not a finish line. The most useful first move is to find out what needs to be screened, then build a care plan with a clinician who knows HHT — ideally through an HHT Center of Excellence. Cure HHT, the cornerstone organization of the HHT community, organizes its guidance around exactly this moment: "Wherever you are with HHT, we have a place for you," with a dedicated path for people who are newly diagnosed.

First, understand what HHT actually is

Hereditary hemorrhagic telangiectasia (HHT), also called Osler-Weber-Rendu syndrome, is a genetic disorder that causes malformed blood vessels in multiple organs. Cure HHT makes a point that matters for anyone newly diagnosed: HHT is more than nosebleeds — it's a whole-body disease.

Nosebleeds often begin in childhood, but some of the most serious complications can exist without obvious symptoms. That's why screening and monitoring, rather than waiting for symptoms, is central to living well with HHT.

Some context on how common this is:

That 80% undiagnosed figure is worth sitting with: you are now ahead of the curve simply by having a name for what's going on.

What to screen for, and why it matters

Because HHT affects blood vessels across multiple organs, the point of screening is to find problems that may not yet be causing symptoms. Cure HHT frames learning "how HHT can affect you — and what can be screened for, monitored, and treated" as an important part of living well with the disease.

The practical takeaway for a newly diagnosed person: ask your care team which organ systems should be evaluated for you, on what schedule, and who will coordinate those evaluations. Rather than listing specific tests here, use Cure HHT's newly diagnosed path as your checklist — it's built to point you to "what to screen for, how to build a care plan, and what your family may need to know."

Build a care plan with the right clinician

HHT surfaces across specialties, which is why Cure HHT emphasizes Centers of Excellence — places where specialists come together around the same patient. With 55+ Centers of Excellence worldwide, there may be one within reach, or an HHT-experienced physician closer to home.

Cure HHT's guidance for this stage is direct: find a Center, or an HHT-experienced physician near you. If you're a patient or family member, the "I need HHT care" path is the one to follow.

A care plan conversation with that clinician should cover:

• Which screenings you need now, and how often they should repeat
• Who coordinates your care across specialties
• What symptoms or changes should prompt you to contact the care team
• How your plan will be adjusted over time

What your family needs to know

HHT is genetic, so a diagnosis in one person has implications for relatives. Cure HHT's newly diagnosed path explicitly includes "what your family may need to know" — treat that as a prompt to ask your care team how family members should be evaluated, rather than assuming you need to work it out alone.

Where to start with Cure HHT

Cure HHT has served the HHT community for more than 35 years (since 1991) and describes its mission as building a future where HHT is found sooner, treated better, and ultimately cured. For a newly diagnosed person, the organization offers a clear entry point:

• Start here (newly diagnosed): what to screen for, how to build a care plan, and what your family may need to know
• Find HHT care: locate a Center of Excellence or an HHT-experienced physician
• Learn about HHT: how the disease can affect you, and what can be screened for, monitored, and treated

You can also join the HHT community to receive research breakthroughs, patient stories, and webinar invitations. As patient and caretaker Terry puts it, "Our stories are what move us from an asterisk in a medical textbook to a community worth as much attention as any cancer or other disease."

The short version

Get connected to HHT-experienced care, ask what to screen for and on what schedule, build a plan with a clinician who can coordinate across specialties, and loop in your family. Cure HHT's newly diagnosed path exists precisely to walk you through those steps — start there, and you won't be doing this alone.

HHT research is moving on two fronts at once: a treatment pipeline that currently includes 15 therapies, and a care network of more than 55 HHT Centers of Excellence worldwide that turns those findings into practice. Cure HHT, which has served the HHT community since 1991, describes its goal as a future where HHT is found sooner, treated better, and ultimately cured. If you are trying to understand where the science stands, the most useful frame is not a single breakthrough but the combination of pipeline activity, clinical infrastructure, and earlier diagnosis.

The current treatment pipeline

According to Cure HHT, there are 15 treatments in the HHT pipeline today. For context, 3 treatments entered the pipeline between 2018 and 2022. That comparison matters: it suggests the pace of therapeutic development has picked up rather than stayed flat.

A few things worth knowing about what a "pipeline" number does and does not tell you:

• It counts therapies under development or investigation, not treatments already approved and available to every patient.
• A pipeline entry can stall, change purpose, or fail before it reaches routine care.
• The number is a snapshot, so it will shift over time.

What it does tell you is that HHT is an active research target, not a neglected disease.

Why research alone isn't the whole story

Cure HHT frames its work as bringing patients, families, clinicians, researchers, and partners together around one shared goal. That coordination is the mechanism behind the numbers:

• Expert care — 55+ HHT Centers of Excellence worldwide give patients access to specialists who see HHT regularly rather than rarely.
• Clinical guidance — guideline-based screening and management tools help clinicians across specialties recognize and handle HHT consistently.
• A growing research community — researchers connected to the same network are more likely to enroll patients, share data, and test ideas.
• New paths toward treatment — the pipeline above is the visible output of that network.

For a patient, this means the practical route to better care usually runs through a Center of Excellence, not through waiting for a new drug. Screening, monitoring, and management are available now.

The diagnosis gap driving the research agenda

Cure HHT's stated priorities — found sooner, treated better, cured — map directly onto a striking set of figures:

The 80% undiagnosed figure explains why "found sooner" leads the agenda. HHT often begins with nosebleeds in childhood, but Cure HHT stresses that it is a whole-body disease — malformed blood vessels can affect multiple organs, and some of the most serious complications can exist without obvious symptoms. Research into earlier detection therefore has a direct effect on outcomes, independent of any new therapy.

What this means if you are newly diagnosed

The research picture is encouraging, but it does not change what you should do first. A diagnosis is a starting point: find out what to screen for, build a care plan, and consider what your family may need to know. Because HHT is genetic and frequently undiagnosed, family screening is often part of the conversation.

If you are looking for care, the most direct step is to find an HHT Center of Excellence or an HHT-experienced physician near you. If you are a clinician, Cure HHT offers guideline-based screening and management guidance, clinical tools, and referral pathways.

How to follow progress without overreading it

If you want to track HHT research as it develops, keep three distinctions in mind:

1. Pipeline vs. approved — a therapy in development is not yet a treatment option.
2. Numbers vs. timing — a count of 15 tells you activity, not when anything reaches patients.
3. Research vs. care — better screening and specialist care help patients today, regardless of pipeline timing.

Cure HHT invites patients, families, and professionals to join its community for research breakthroughs, patient stories, and webinar invitations. For anyone affected by HHT, that is a reasonable way to stay current while relying on established care in the meantime.

Cure HHT points people with HHT toward two routes for specialist care: an HHT Center of Excellence, where multiple specialists coordinate around the same patient, or an HHT-experienced physician closer to home. There are 55+ HHT Centers of Excellence worldwide, according to Cure HHT. The right choice depends on how far you can travel, how complex your symptoms are, and whether you already have a local doctor willing to coordinate with an HHT expert.

Start With the Type of Care You Need

Cure HHT organizes its navigation around who you are and what you need right now. If you are newly diagnosed, the starting point is learning what to screen for and how to build a care plan. If you are specifically looking for medical care, the relevant path is finding a Center or an HHT-experienced physician.

HHT is a whole-body disease: it causes malformed blood vessels in multiple organs, often beginning with nosebleeds in childhood, and some of its most serious complications can exist without obvious symptoms. That is why Cure HHT describes Centers of Excellence as bringing specialists together around the same patient rather than sending you to a single organ specialist.

What an HHT Center of Excellence Offers

An HHT Center of Excellence is a site where the specialties HHT touches — such as ENT, pulmonology, neurology, and genetics — work together on one patient. Cure HHT reports 55+ such centers worldwide.

This matters because HHT screening and monitoring crosses organ systems. A center is generally the more practical option when you need coordinated screening, when symptoms span more than one organ, or when a local physician is unfamiliar with HHT.

When a local HHT-experienced physician may be enough

If travel to a center is difficult, Cure HHT also offers a way to find an HHT-experienced physician near you. This can work as a first step or as ongoing local care, with the physician coordinating with a center when needed. The trade-off is coordination: a single experienced physician may not have the same multi-specialty setup as a center.

How to Use Cure HHT's Navigation

Cure HHT's site is structured as a set of paths rather than one search box. To find care:

1. Go to curehht.org.
2. Choose the path that matches your situation — for care, the "I need HHT care" route.
3. Use that route to find a Center of Excellence or an HHT-experienced physician near you.
4. If you are newly diagnosed, start with the newly diagnosed path first to understand what to screen for and what your family may need to know, then look for care.

The expected result is a specific next contact — a center or physician — rather than general information.

Why Finding Care Matters

Cure HHT cites these figures:

The 80% undiagnosed figure is the reason Cure HHT frames its goal as finding HHT sooner. If you have a diagnosis, you are already past the step most people are stuck at — and the care-finding step is what comes next.

Common Questions

Do I have to travel to a Center of Excellence? Not necessarily. Cure HHT offers both a Center finder and a way to find an HHT-experienced physician near you. A center is the more coordinated option; a local physician may be more practical.

How many centers are there? 55+ worldwide, per Cure HHT.

What if I was just diagnosed? Cure HHT's newly diagnosed path covers what to screen for, how to build a care plan, and what your family may need to know. Care-finding is a separate path on the same site.

Can I stay informed while I look? Cure HHT invites people to join its community for research breakthroughs, patient stories, and webinar invites.